Sharing my journey of how to advocate for my developmentally disabled children through the maze of the public school system: IEP's and other acronyms that will make you want to pull your hair out or maybe the school districts' collective tangled hair out!

Thursday, September 30, 2010

Our district has always had a habit of avoiding doing what they are supposed to do for as long as possible. They know they will eventually have to do what the law says but if they can put it off it will save them money (they think!). One of the ways they have done this is by not inviting decision makers to the meeting.

We don’t often know who the decision makers are when we first begin the IEP process. As you go along you figure out who in your district needs to be there, but early on it’s often impossible to know. If you are looking at a change say between districts or from County schools to district or district to County schools there must be a representative from the place you hope to change to at the meeting or no change will happen. There must be someone at the meeting who can make the decision and not inviting them is the easiest way to avoid doing what you are asking for them to do.

When our daughter was in pre-school we decided we needed to change her placement. The school where she went first was about a 30 minute drive away. We were told she HAD to go to that particular school because she was non-ambulatory (she didn't walk until 3 years, 4 months. We agreed to that school originally because we believed this lie, and then when she could walk and we were told by her regional center case worker that she didn't like how the staff was treating our daughter we decided it was time to make a change.

I requested an IEP meeting and told them that we wanted to change her placement. We had a meeting, but no one from the new school came so we couldn't make the change. Another meeting was set - for 30 days later (the maximum allowed by law) and once again, whoever needed to be there wasn't there, so another meeting was scheduled, again, 30 days later. Again, the right people weren't there. At this point I said "Fine, but my daughter will not be attending school until you get this meeting set and we get the new placement worked out." They were able to get a meeting put together, with the right people, and get her placed before that 30 day time limit once they knew they would not be getting their paycheck for her unless they made a new placement happen.

This taught me a few of things. We can play hardball with them, especially when it comes to attendance before they legally have to attend school. Also, we often hear that our kids cost a lot of money but I have had at least one school do everything they could through four IEP meetings to keep her, so my bet is they get more money than it costs to provide the services they actually provide in most cases. If they are fighting to keep your kid, they are probably making a bundle on my child and I probably need to be looking at what they aren't doing that they should. My child should not be a money maker for the district - they should see her as a child to invest in, not as a cash cow.

Wednesday, September 29, 2010

BIG DISCLAIMER: I am not a doctor, I don't pretend to be a doctor, and I am not giving medical advice here. I am giving my opinion as one parent to another about how I consider psychiatric medications and how they may or may not be used on my child. I don't advocate FOR or AGAINST medications. This is a highly personal decision, but since I have some knowledge of these types of medications due to the fact that in my former life(before children) I worked in a psychiatric hospital with patients who suffered from a number of severe mental health issues so gained a bit of understanding of different types of medications used for psychiatric disorders so I make somewhat informed decisions about my child's medications. I don't know a lot about specific medications and i don't intend to try to explain how drugs interact or work on different parts of the brain or anything like that. That is what doctors are for, but having a working knowledge of the kinds of medications that are used and what those classifications means helps me to make more informed decisions about my daughter's medications than a lot of other people are able to make. This is just me sharing about how I think when I hear a doctor talking about which medications to prescribe for my child, and I think it might help if you don't ahve this sort of knowledge.

I was talking to a mom today who was sharing about her daughter with autism and ADD/ADHD having been medicated in the past and that she believes she may want to try medications again. I am not an anti-medication person, I medicate my daughter and although I wouldn't be so rude or presumptive as to tell others they should medicate, I also wouldn't tell others not to. A lot goes into that sort of a decision. What this mom shared though, shocked me! Not because I would expect her to know about classifications of drugs and what different drugs are intended to do, but having some experience working with psychiatric patients I have some limited knowledge of some psych medications and it seemed that her daughter had been given medications for symptoms she just did not have.

In the psych med world there are basic types of medications. Anti-anxiety or tranquilizers which are used for anxiety (no duh right?). Then there are anti- depressants which are for what else, depression. Some of the anti depressant medications are also used for anxiety disorders and for Obsessive Compulsive Disorder. There are mood stabilizers which are mostly for people who have mood swings, usually with Bipolar disorder. There are medications that are intentionally designed to help with both anxiety and depression, because those two so often go hand in hand and they are sometimes used for people with Bipolar disorder too. Then there are the big guns, anti-psychotic medications. These are really strong medications intended for use for people who have a condition called psychosis. Psychosis is a condition that is characterized by the person not being in touch with reality. People with psychosis see things that aren't there, hear things that aren't there, have thought disorders like paranoia or even odd thinking, an example I heard recently about a young man who shared that his hair was growing back in on his head (I have no idea why it was gone in the first place but it was) and he said that the hair coming back on his head was itching his brain. That is a thought disorder, it doesn't make any sense in our world that we consider "normal". A client I worked with at one time believed he was the "Ambassador from Mars", this is another type of thought disorder. In addition to these drugs are the medications generally given for ADD/ADHD which most often are stimulants, but at least one is a non-stimulant, it is called Strattera. They also use some blood pressure medications for anxiety and ADD/ADHD, the newest being Intuniv, which is a long acting form of a blood pressure medication that is given in doses much lower than are used for patients with high blood pressure.

So, this woman was telling me that she had hoped to get back into her daughter's former psychiatrist, but he didn't have any openings. She told me that her daughter had been on Risperdal (an anti-psychotic) and Abilify (a mood stabilizer/anti-psychotic). I don't know this woman's daughter but we have spoken several times before and this surprised me. I asked if her daughter was aggressive in the past. She said no. Was she self-injurious? Did she have extreme melt-downs in which she could have harmed herself? Did she hear voices or anything like that? She said no. All she had felt she needed the medications for was her ADD/ADHD, and she shared that really her daughter wasn't especially hyperactive, maybe impulsive but not hyper. So why would the doctor have put her on such a strong medication? The other thing that struck me was that the medications hadn't helped with her daughter's ADD/ADHD so she had stopped medicating her thinking that medication wouldn't help her child. The only reason she is going back to visit that idea is that the RC suddenly terminated her daughter's ABA when the child was out of school for summer break, so she also had no ABA funded by the school district and she was seeing her daughter regress and have behaviors she hadn't seen for a long time. She doesn't want to see her daughter forced into a more severe classroom that she needs because her therapies were abruptly ended so she is feeling a bit desperate.

So I'm thinking, "Isn't God good? He kept this child from going back to a doctor who was giving her medications for conditions she doesn't have and not giving her medications for the condition she does have!" Then I got to thinking back to my early college psychology classes when we were taught that autism was supposed to be "childhood schizophrenia". We aren't completely sure about what autism is and what it isn't but we can be very sure that it isn't any kind of schizophrenia, it is completely different.

So, when a psychiatrist starts naming off medications for MY kid I want to know what kind of medication they are talking about. Are they talking about prescribing an anti-depressant, an anti-anxiety, an anti-psychotic medication, or are they talking about prescribing a stimulant or non-stimulant medication to help with ADD/ADHD symptoms? If I go in and tell the doctor my child is having sinus problems and they want to put a cast on her arm I know something is amiss. It's the same if I say my child seems to have or has been diagnosed with ADD/ADHD and they want to give her an anti-psychotic medication.

Autism is not a psychotic disorder. There are no medications that have been studied and found useful for autism - although there are medications that are used for different symptoms of autism. Now, kids with autism can have all types of psychiatric problems and many do, but we can't give them a pill and have the autism get all better. Many kids with autism also have ADD/ADHD. Another problem that is often concurrent with autism is anxiety. OCD (Obsessive-Compulsive disorder) is highly correlated, and kids with autism are more likely to get Tourette's Syndrome than in the typical crowd. So our kids may benefit from medications for some or many of these issues. Heck, we even fostered one beautiful child who had both autism and schizophrenia. This is very rare, but once she was given anti-psychotic medication she started sleeping because she didn't have the voices in her head keeping her awake all night. For her, anti-psychotic medication was beneficial, in fact it was nearly a miracle to watch her come out of her psychosis and begin to enjoy life, but then her father had been diagnosed with schizophrenia so she came by it genetically and she wasn't being medicated inappropriately. Occasionally kids who are very aggressive can benefit from anti-psychotic medication, even then I would want to try other medications first, medications that have less side effects and less possibility of long term effects. We need to know why a doctor is giving our children the medications they are suggesting. We need to know they aren't living in the dark ages of calling autism "childhood schizophrenia" and medicating for a condition that does not exist.

I always ask questions like what classification of medication is that? Why do you think that particular medication would be better than another for my child? What side effects should I look for? Which symptoms is that particular medication supposed to help with? The answers give me an idea of what the doctor is thinking. Are they thinking my child has an attention problem or do they think my child is not based in reality? I know which it is, do they? I also ask my pharmacist a lot of questions, but then I have a great pharmacist, not everyone is so lucky, but it's great if you can find one who will answer your questions and go over side effects with you.

I hope I'm not being too "preachy" here. I just had not realized how blessed I am to have the information I have and how unfortunate it is that some doctors will just make so many bad decisions for parents who aren't in the know. If you aren't sure about a medication that is prescribed for your child, ask the doctor about it, if they get defensive, find another doctor. Look on the internet and find out what kind of medication your child is prescribed, get to know what side effects to look for, if you don't get a list of them with the medication, go online and Google (or Bing or Ping or whatever) the name of the medication and side effects (i.e. Prozac side effects). Ask therapists since they are trained in medications even though they don't prescribe. Ask your child's other doctors, their pediatrician or immunologist if you are unsure about what to do. Get multiple intelligences going. Being nosy could be the very best thing when it comes to medications for our kids with autism.

Finally: If you are interested in looking at more information about medications I have included a medication gadget to your right. I'm sure I will add additional links as time permits but this are some of the best links I could find right off the bat.

This isn't like the sample letters I have written, it is more an idea of how to go with this sort of letter. Since a response to a letter of Prior Written Notice could be about so many different services or assessments, etc. it becomes apparent why I have chosen to use our letter as an example rather than offering a sample. I believe that if one goes with a generic sort of letter in this case, one will get a generic sort of response which is not at all meaningful or helpful. Just a warning - my sarcastic sense of humor comes through in this particular post, but not in the meat and potatoes of the letter. Our director of special education has a name so close I couldn't help but use the pseudonym Dr. Do-Little. =) "Chlöe"

AddressCity, State, ZipSeptember 29, 2010

Dr. Do-LittleDirector of Special EducationUnified School DistrictAddressCity, State, Zip

The purpose of this letter is to determine your reasoning behind denying my daughter, further outside speech therapy. In your letter of Prior Written Notice you simply state that you “respectfully deny” the request. Even with the additional two hours per week of therapy that she was receiving through Speech and Language Center for four months she was not able to meet all of her speech and language goals in the past. Now another expert has recommended that in order to overcome the issues of her Central Auditory Processing Disorder and gain from her education she requires two hours per week of Speech and Language Therapy outside of school hours, yet the district continues to say “no”.

I would think the district would take the recommendations of this expert seriously, especially considering that she is the district’s expert. I point this out to make it clear that although the district has repeatedly referred to this evaluation as an Independent Educational Evaluation it is not. It is the initial evaluation for CAPD offered by the district. This evaluation was only offered after several phone calls and my instructing district personnel on the fact that although district personnel have stated that CAPD had already been tested for, it had not since there is no district personnel legally qualified to test for CAPD. The only person qualified by law to administer testing for CAPD are audiologists, not school psychologists or speech therapists as I have been told by district personnel. Those people are only legally qualified to administer a screening test for CAPD, and given the significance of her CAPD I do not believe that the district was making even a minimal effort to screen for CAPD or it would have been revealed years ago when it could have been addressed with less difficulty and expense. In fact, had this been addressed early on, as it should have been, the district may have saved itself several thousands of dollars in overall special education expenses since from what I can gather, my beautiful daughter’s need for special education lies primarily, if not completely in her processing difficulties.

In addition, I do believe it is against the rules set forth in IDEA to conduct an IEP meeting without decision makers in attendance. Ms. DiGoo-Goo was not able to answer the question of additional speech therapy at the meeting, when in fact I believe you could have foreseen that the question might come up since the recommendation had been made in the report that the district was in receipt of well in advance of the IEP meeting on September 00, 2010.

Finally, I would ask that the district provide more than a cursory response in its Prior Written Notice, the law is clear that the district must provide an explanation, with factors that are relevant to the district’s refusal to provide necessary services as demonstrated by the expert who reported on this need in my daughter’s IEP meeting. Can you point to literature and/or other experts who would disagree with the expert the district referred us to? If so, I would wonder why the district would have referred us to her in the first place, but I believe we are owed more than a baseless opinion before we are willing to accept that this is the correct way to treat this educational condition.

Please get back to me at your earliest possible convenience and respond to my questions as well as letting me know how you intend to proceed to meet my daughter’s auditory processing disorder and speech and language issues since it is obvious that the IEP offer will not meet her needs at this time. When she was offered the services in her current IEP the district did not even realize that she had CAPD and so the district is apparently not willing to address this issue without adding further services to help her to overcome a condition that can be overcome with appropriate services.

Should you have any questions regarding this correspondence, please feel free to contact me. 000-000-0000.

Autistic Teen Clings To Life After Stabbing
Boy Moved To A Different Hospital

Reporting
Andrea Menniti
MODESTO (CBS13) ―

Neighbors of the mother accused of repeatedly stabbing her autistic son say they had only known the suspect as a devoted mother and autism activist who loved her son more than anything.

Anitra Hankins, 36, is under suicide watch in Stanislaus County custody on charges of torturing, tying up and viciously attacking 13-year-old Miles Hankins on Sunday night.

"He had stab wounds all over him," said next-door neighbor Christopher Tooze. "A big stab wound in the head."

Acquaintances were at a loss to describe how the incident could have happened. Anitra Hankins was regarded as a great mother who once served on the state Council on Developmental Disabilities.

In her 2004 resignation letter to the board, Anitra stated, "My health and that of my special needs child will not permit me to continue fulfilling my responsibilities as I would prefer."

The single mother passed out fliers and held prayer vigils for Miles in May while the boy underwent dangerous but lifesaving surgery, neighbors said.

"For her to do that, it seems like Dr. Jekyll [and] Mr. Hyde, you know," said neighbor Gordon Jameson.

Miles is still listed in critical condition at the hospital. He has was transported to a different, unnamed hospital where he remains under the care of child protective services.

A memorial supporting Miles is growing outside the Modesto apartment complex where the attack took place.

There isn't a lot to say here except that the people who are charged with helping our kids to learn to live with some meaning need to get a handle on actually doing that job. I am so grateful that I have friends and a husband I can talk about my frustrations, fears, and anger with. Though the friends are few these days since most people don't understand what we go through and want to avoid it like the plague. I completely understand how parents can go over the edge when it is a struggle every day and on top of it we have to fight-fight-fight for just the basics for our kids. All I ever used to ask for was teach my kid to talk/understand/communicate. Now I want more, but not much more, I want her to get enough services and educational benefit to live a safe and happy life. I'm sure there are a lot of other parents who feel the same, yet we meet confrontation at nearly every turn. It's no wonder people suffer psychotic breaks, most of the time it seems impossible to help our kids and that kind of stress can overwhelm, especially if one does not have a good support system. If we think we could never be in this woman's shoes then we are the most vulnerable. Realizing that any of us given the right (or is that wrong?) set of circumstances could suffer a moment or more of insanity is vital. It is in the preparation for such an event through the building of support and personal transparency that will keep us from this type of tragedy.

Tuesday, September 28, 2010

I got a letter from our SPED Head today. SPED Head is a friend's somewhat affectionate nickname for the director of special education. We just got a new SPED Head in our district. She was moved over from another department, not because she had any special knowledge of special education, but probably because she just hadn't pissed off a ton of parents in her former position. I met with her in July and she told a good story of wanting to see that morale improved with the parents and that the kids got what they needed to the best of her ability. In other words, she said what she was expected to say, used a tone that implied she cared, and then proceeded to do exactly what has been done prior to her taking the position. In other words, nothing that benefits our kids.

So the letter I got today....it was what is called a letter of "Prior Written Notice". These letters really have little to do with "prior" but they are written and of some sort of notice. Ours was to tell us that they were not going to give our older daughter the two hours of outside speech therapy that was recommended by the expert in her evaluation done by a company contracted by the district since this particular evaluation can't be done by any of our district personnel (no one employed by the district is qualified to perform the evaluation). The letter said "the district has strongly considered your request and at this time respectfully denies your request". Okay, I suppose the use of the word "strongly" is supposed to make me think they care more this time than any time in the past when they have only "considered" my requests. And as for the "respect", I don't know, but this seems pretty disingenuous to me. I mean how can one be respectful and at the same time refuse to deliberate using facts in their duty to educate our children?

For some reason, this particular letter raised my curiosity. I decided to look up what this letter is supposed to do. I found out it is supposed to include: 1) a description of the actions proposed or refused by the school district - which it did 2) an explanation of why the action was proposed or refused - which it did not 3) a description of any other options considered and the reasons those options were rejected - did not - all that was included was that they would only do what they are already doing which was below the recommended level of service recommended by the expert they chose and they paid 4) a description of each assessment procedure, test, record, or report used as a basis for the action proposed or refused - nope not included, because there was no basis for their response except that they don't want to pay for the services 5) a description of any other factors relevant to the action proposed or refused - nope, again because there is no relevant reasoning behind their response except that they don't want to offer the services ($$$$$) 6) a statement that parents of a child with a disability are protected by the procedural safeguards - the statement is there but it is meaningless since the district ignores said procedural safeguards.

I write about this because I know from talking to other parents that this is the norm. The Prior Written Notice almost never includes any explanation for districts' decisions. I have never heard of one that includes sound reasoning behind district decisions, they probably exist, but we don't hear from parents in the districts who do this correctly because they are getting their kids' needs met.

I'm not fully sure of where to go from here. I know I could file a compliance complaint but the truth is, the CDE will not apply any meaningful sanctions for this type of infraction. And that is even if they don't just find for the district because there is really little incentive for the state to actually hold districts accountable to obey the law. Once I know more I will come back to this issue and share what might work, but in the meantime if any of you know of a way to push this issue I would love the input, if districts can really be forced to use meaningful deliberation rather than just saying "no" to every request with no thought then we might have a way to get meaningful services for our children.

I've been at this blog for the last three days now and I'm thrilled that I already have three followers - so one is my husband - but still. Thanks for checking in! I haven't figured out how to write to you individually yet and say thank you so I'm doing a group thank you. If you find anything especially helpful please let me know. I've gotten a lot of requests for help over the past several months and I'm hoping I can send people here for a lot of the answers instead of retyping the same or similar letters over and over. It's become apparent that people tend to run into the same problems over and over and this seems like a much better way to offer the help I am happy to share, as well as giving myself a great way to organize what I need to refer to over and over! If you think there may be a better way to organize something or you've had ideas of ways to deal with some of the issues we run into please feel free to share them. I don't pretend to know all there is to know, in fact I use an attorney to get through some of the toughest issues and I'm proud to say I know a lot of what I do because of our attorney, Drew Massey. I like him, respect him, and steal a lot of his best information! =)

Monday, September 27, 2010

If you have paid for an IEE out of pocket in order to use an expert not employed or contracted with the district or SELPA you will need to gather all relevant information and send it in with a request for reimbursement. This can help you get that letter started. I would highly advise only using experts who are willing to appear at your child's IEP meeting since this is the only way they can clearly advocate for the services they believe your child requires. I have been to meetings in which the expert "appeared" by phone, and this was not at all effective. If your district will not pay for the expert to appear at the IEP meeting I would pay them out of pocket if at all possible.

Everything in italics will need to be set up with your personal information.
Your address
City, State Zip
Date

Name
Director of Special EducationYour District Address
City, State Zip

RE: Child’s Name – D.O.B. 00-00-2000

SENT VIA: method(s)

Dear Name,

The purpose of this letter is to provide copies of invoices and proof of payment and request that payment be made for the enclosed invoices for I.E.E.’s for Child’s Name.

You will find two invoices and proofs of payment to Name for providing type of testing, report writing, and attending my child’s IEP and sharing the results of their testing. The total paid to Name is amount.

You will also find invoices and proofs of payment to Name for testing, writing a report, and attending the IEP to report on their findings regarding area tested. The total paid to Name is amount.

If you have any questions regarding these invoices and proofs of payment please feel free to call me at 000-000-0000.

I am writing to request that an Individualized Education Plan (IEP) be held regarding , Child’s name (birthdate XX-XX-XXXX). I would like to discuss his/her current goals and progress and have noticed that whatever issue/condition/lack of progress may indicate the need for some changes.

Italics indicate area that you will need to supply your personal information before sending the letter.

Address
City, state
Date

Dear Teacher’s name;

I am writing to request that an Occupational Therapy (or speech, behavioral, assistive technology, etc.) Evaluation be done on my child, Child’s name (birthdate XX-XX-XXXX). I have noticed particularly that whatever issue/condition/lack of progress may indicate a need for these services.

I always send thank you notes whenever I can. Although the people at the district may or may not take this seriously, it does paint me as a person who is reasonable, understands appropriate behavior, and is gracious. This is important should I later have to go to court. It is a paper trail of kindness and decorum which would make it difficult for the district to portray me as difficult and unreasonable as they are likely to do given any opportunity.

Italics indicate areas that you should input your own information.

Your addressCity, State ZipDate

NameDirector of Special EducationYour District AddressCity, State Zip

RE: Child’s Name - D.O.B. 00-00-0000

SENT VIA: Method

Dear Name,

The purpose of this letter is to respond to your letter dated Month day, Year in which you agree to provide an Independent Educational Evaluation (“IEE”) in the area of whatever area at public expense. Thank you for agreeing to that evaluation. Thank you also for providing the names of several possible resources. As you are aware, we are not required to choose from the provided list, and as such we will be requesting that Name, perform the IEE.

Name is a licensed (or certified therapist or doctor, etc.) whose offices are located at Address, City, State Zip. The phone number is 000-000-0000. The fax number is 000-000-0000.

Should you have any questions regarding this correspondence, please feel free to contact me at 000-000-0000.

Italics indicate areas in which you should place your own information.

Your address
Your City, State Zip
Date

Name
Director of Special EducationYour District
Address
City, State Zip

RE: Child’s Name – D.O.B. Child’s Birthdate

SENT VIA: US Mail or Fax or Hand delivered

Dear Name of Head of Special Education,

The purpose of this letter is to request an Independent Educational Evaluation (“IEE”) at public expense pursuant to 34 C.F.R. 300.502(b). At this time I disagree with the Type of Assessment Report presented at Child’s Name IEP on date. As a result we are requesting an IEE at public expense. We intend to consult with Name of alternate provider who is legally capable of providing the evaluation along with address and phone number (if you already know it, if not leave off this sentence).

Please be advised that if the District refuses to fund the IEE, we reserve the right to obtain it and seek reimbursement. Please respond “without unnecessary delay.”

Should you have any questions regarding this correspondence, please feel free to contact me. 000-000-0000 or 000-000-0000.

Sunday, September 26, 2010

My daughter who has Down syndrome and Autism and is primarily non-verbal at this time was recently given a psycho-educational evaluation by one of the school district psychologists. He gave her a few tests, one is the WASI which is for verbal kids, she had a lot of trouble with it. In his defense, he also gave her a non-verbal test, the NNAT. Their website, which the school psych could have read, says that the NNAT “is frequently used as a screening test for gifted program entry.” Also, “The NNAT® is commonly considered to be a difficult test.” Maybe that's why she seems to have made no gains, perhaps even regressed since her last testing, when in fact anyone who knows her has seen real improvement in her functioning, in her speech, and in her behaviors. The use of this very inappropriate test makes it appear that she is not getting any benefit from the services the district is providing. This then becomes their excuse for offering no more services or at least severely limiting what services they will offer.

In addition, the "very qualified professional" they used to evaluate our child called her "mentally deficient", deficient for what? Deficient for doing brain surgery I would agree, but too deficient to gain in a special education program? Early on we believed what we were told by the people at the schools, we believed all the people in the schools who told us that she couldn't have Down syndrome and autism together when in fact they were mistaken, or wrong, or I don’t know, possibly even intentionally keeping her from getting the help she needed. Mentally deficient is not a term used by any professionals for diagnosing children with learning disorders or other pervasive developmental disorders. It is NOT in the Diagnostic and Statistical manual of Mental Disorders or in the ICD-9 used by physicians. It is also insulting and inappropriate.

We as parents must be vigilant in areas we never expected in order to make sure that our children receive the fair and appropriate public education they are to be given by law. Luckily, thanks to our attorney I have learned to check every test on the internet that is given to my children. The people who sell the tests want to make sure that the districts and the evaluators who purchase them know what the tests are for so they give pretty good descriptions. We can’t always know why someone might give our child a test that seems inappropriate without asking because there may be information in the test that isn’t advertised, but this kind of testing can’t really be justified! It seems to me that every time we have an IEP it is another opportunity for me to learn, they may fool me twice, but never with the same bag of tricks.

The law says that the district has to provide an "appropriate" education so they fall back on that. But who is to say what is appropriate? I am currently trying to get my hands on the list put out for Speech and Language Therapists (SLP's) of what is recommended for different speech diagnoses. I believe that will help us in settling what is appropriate, at least getting us closer for what appropriate services are for speech. I doubt we will ever get what they suggest without attorneys and due process which is quite frankly very difficult emotionally to go through, not to mention expensive if you use an attorney. It seems that having an actual therapist there to advocate for what their report says carries a lot more weight, and we have had ours done as IEE's (paid for by the district) and they have insisted on the person who writes the report attending the meeting. Even if the district doesn't insist and therefore will not pay for them to come, I would highly recommend paying them to come to the meeting. You can request that you go over their area first and let them leave as soon as their portion is done to save some money.

I try to avoid any SLP who will just write in whatever the district tells them to give as far as what type and amount of services, this is unethical and tells me that the person is really there just for the paycheck. We currently are fighting for continued speech while in "Stay-put", but we have two different speech evaluations by the same person, one dated the day before the districts "pre IEP meeting" that they aren't supposed to have recommending staying with what she already has and one dated the day after their "pre IEP meeting" that isn't supposed to happen that cuts their recommended services to 33% of what was recommended before that meeting they weren't supposed to have. Everything else stayed the same. I always look for this kind of thing or for the therapist to say something like, "they really need more, but we can't take them out of class for so many hours a week" because then we have them. Then they must provide a Non-Public Agency to cover what the child actually needs. Surprisingly these mistakes happen all the time. Especially when you get the teacher and/or the SLP (or whatever area you looking at) to work with you. I love to give them little thank yous at Christmas and at the end of the school year and offer to help with a party or two or three a year. My daughter's teacher isn't crafty, so I always do a winter craft for her. These kinds of things can get you the help you need in the IEP meetings (or at least little hints outside of meetings of what is coming). I really am not excessive, I give them $10 gift cards and some homemade cookies or candy.

Right now, our daughter is in Home and Hospital Instruction or HHI (due to recent surgery) and we are probably going to keep her there until we can get some real progress made. Her doctors have agreed to sign the necessary documentation and that way a teacher comes to the house for 1 hour per day of school for the week. That way we can do all the other therapies as needed and not interrupt her school day. It means that I have no time to myself, but it's worth it. I'm sure it's not a lot different for the home-schooling moms except that I get help in teaching her the academic things. They can be in HHI for many reasons, including difficulty with fluorescent lights setting off seizures, psychological needs, physical needs, severe sensory-motor issues that make the classroom too frightening or intense for the child to learn, really any reason. Our daughter learns much better in the home environment so why not use that to help her for the time being?

Saturday, September 25, 2010

We were told that our daughter was beyond learning to speak at the end of third grade and that she would have to go to using PECS exclusively. The message was, she was beyond salvation and could never be taught to talk. We were told that they had worked very hard for 4 years and since our daughter had made no progress she couldn’t be helped. She would no longer (Ha! Like they ever had!) be given any therapy that worked toward talking but would instead receive instruction only on PECS (picture exchange communication system). We reluctantly agreed (sort of), although we knew deep down that this didn't make sense, they hadn’t tried at all. We pushed for teaching our daughter to say her name in speech, even being satisfied with a one syllable nickname since two syllables were so hard for her. The SLP agreed reluctantly to include this goal. The truth is before this our daughter was given collaborative speech (which equates to basically no speech) and one year of speech in which the SLP would not give our daughter any time if she was having a behavior - she has autism, of course she had behaviors all the time! And what else they didn't tell us was that the school should have been giving us help to manage those behaviors so she could learn (but that's for another post). So the one year that she was supposed to get speech therapy at school she almost never got it because the therapist didn't know how to deal with a child with behaviors!

So, the district has never (well almost never) given our daughter speech therapy, and now they say they won’t give it to her and blame her lack of improvement for why they won’t give it to her when in fact they have never done anything to help her improve!

When she changed schools, and was actually given small group speech and was learning to say some words; she actually said a few 2 syllable words which had seemed impossible. She also started to say her name. Her nurse and I worked with her on her alphabet, and she has learned all of the letters, saying most of the letters very clearly at this point. This is the child who would not be able to talk. She now says her name pretty clearly, and she has uttered phrases such as “Mondo, it’s your turn” and “I can help” with surprising regularity. This is not an over zealous mom talking, this is based on reports from Megan’s teacher (the only one who has been doing speech with her for at least the last three months and probably the last three years except for her short time at another school).

Now, also to add insult to injury…. it is near impossible to get insurance to pay for speech and language services when children are in school because this is supposed to be covered by school. In addition the insurance companies are writing into their policies that they will only cover this type of service for people who have had a stroke or surgery or they will cover only a few sessions a year, even lumping together speech, occupational, physical, and any other kind of therapy you can imagine into the few sessions they will cover per year. This leaves our children with NO OPTIONS for getting speech therapy unless we are rich and can afford $85-130 per hour for therapy. Some states, ours included (CA) have added protections for kids with autism, but they seemingly don't apply to kids with more than one diagnosis, like autism and mental retardation, which correct or not is often assigned to many kids with autism.

The only way we have found around this is to get an Independent Educational Evaluation. I will post more on this in another post, but the basic concept is, get an expert in the field (district personnel are NOT experts) and have them do an evaluation of your child. You can have this done at "public expense" which means that the district pays for it. These experts (if you find good ones) will diagnose your child and will suggest how much and what kind of therapy would be helpful for your child based on ethical guidelines, not on how many hours they are allotted or allowed by the school district. The district will try to tell you which experts you can and cannot use but the truth is I would never use the experts our district recommends unless I have also heard through people I trust that these experts are thorough and ethical. The ones recommended by the district may be recommended because they will say what the district wants them to say.

School districts have a special word that means that the child gets NO SERVICES but you aren't told that. That word sounds great, but in truth is meaningless, it is COLLABORATIVE. Collaborative speech services as I now understand it means, the SLP talks to the SDC teacher once per week regarding all children in the class for 30 minutes. We were told this meant that the SLP would be working with our child and with the teacher to assist the teacher to encourage proper speech when the SLP was not there. But when push came to shove and we could document that our child had not received speech services for four months and we filed a compliance complaint with the state board of education it was a big WIN! For all the other kids in the school. Our child was given one hour of compensatory speech to make up for the entire four months of missed sessions since "collaborative" means nothing in a legal sense. I am thrilled that the other kids got what they deserved but I would have liked for my daughter to have gotten what was promised instead of meaningless chatter with the classroom teacher.

We were deceived so we signed IEP’s that did not give what was promised verbally. This is covert deception using “district-speak” which deceives parents into believing their kids will get services that the district never had any intention of giving in the first place.

We have since worked with an Occupational Therapist who insisted on using the term "collaborative" and we agreed to use the term only under very strict guidelines that are spelled out in our IEP notes. At least 25 minutes of each half-hour must be one-to-one therapy with no more than 5 minutes of each half-hour being collaborative.

This is becoming a theme of mine of late. The more I get into this process the more I realize how true this is. They are the professionals and know what is best practice for our children. If you haven’t gotten this idea, you haven’t attended an IEP meeting lately. They say “no” without regard to reasonable requests. They will say “no” to additional speech, to any Occupational therapy, to using an NPA or NPS that you prefer even if the cost is no different, or even cheaper. It seemingly makes no sense, but they invoke the “we know what is best” line or attitude and refuse to give what you feel is best for your child (HEY, WHY SHOULD YOU KNOW WHAT ENVIRONMENT YOUR CHILD WILL DO BEST IN, HECK YOU’RE ONLY THE PARENTS!). We were straight out told that the district has all the right to decide who gives the therapy. Since when is We v. You a team concept?!?!?!

On the other hand -> the district wants to blame us parents for IEP’s that don’t meet our kids needs and the courts go along with it. You signed the IEP didn’t you? So we are too dumb to suggest what would work better for our children and we should just sit back and listen to the (so called) “experts at the school district”, but when we do and things don’t work out we should have been smarter than them and disagreed with their demands (oh I meant suggestions) at the IEP meetings.

So which is it? Are we supposed to be trained, expert parents who know what is going on and be taken seriously at IEP meetings? Or are we supposed to be uninformed and stupid and just take whatever they give us without complaining? The truth is we can’t be both, but we are treated as both, whichever suits the districts’ best interests at that particular time. We need to get the strength to stand up and say that at IEP meetings or at resolution or mediation, and dare I say it? Even at Due Process. We can say it politely, by which I mean no yelling, cursing, or threatening (even though we probably feel like doing all those at one time or another) but we need to say it! We need to take back our power and hold them accountable for their inconsistencies!

And now: A Few Words from Wrightslaw

Who is Responsible for Providing FAPE?
How to Document Your Concerns When You Disagree with the IEP Team
by Pete and Pam Wright

"My daughter has made little or no progress after years of special education. Her IEPs contain vague subjective goals and objectives. If our case goes to due process, is the school liable for not providing an appropriate education? Or, is this the responsibility of the parent who signed the IEP?"

Several factors are operating when an IEP team refuses a parent's requests for a more intensive special education program. Although school personnel view themselves as the experts on educating all children, administrators do not want to reimburse parents for services from a provider in the private sector (i.e., a trained ABA therapist or academic tutor). So the IEP team denies your request - and may blame you for having unrealistically high expectations for your child.Some IEP teams do approve parental requests for more intensive programs. In this article, you will learn about the "free, appropriate public education " (FAPE) your child is entitled to under the Individuals with Disabilities Education Act. You will learn who is responsible for providing a free, appropriate public education and how it is delivered. Finally, you will learn strategies you can use if you have a disagreement with your child's IEP team.

What is a Free Appropriate Education (FAPE)

The Individuals with Disabilities Education Act (IDEA) is the law that provides your child with the right to a free, appropriate public education. The purpose of the IDEA is "to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living..." 20 U.S.C. 1400(d) (Wrightslaw: Special Education Law, 2nd Edition, page 20).

Purpose is the mission statement of IDEA. When you develop, review, or revise your child's Individualized Education Program (IEP), re-read the Purpose of IDEA. Is the IEP designed to meet your child's unique needs? Will the goals in the IEP prepare your child "for further education, employment and independent living?" The answers to these questions will help you determine if the IEP is appropriate and provides your child with a free, appropriate public education.

Educational BenefitCourts have held that to receive a free appropriate public education, the child must receive meaningful educational benefit. Courts have also held that while children with disabilities are entitled to a free appropriate education, they are not entitled to the "best" education, nor to an education that "maximizes" the child's potential. Strike these terms from your vocabulary.How will you know if your child is receiving "meaningful educational benefit"? You use objective information from tests that measure your child's knowledge and skills. This is why it is essential for parents to learn about tests, what tests measure and don't measure, the bell curve, and what test scores mean.Because this is such an important subject, and because many parents and teachers are reluctant to learn about tests and test score,Wrightslaw: From Emotions to Advocacy, 2nd Edition includes two chapters about Tests & Measurements and the Bell Curve. (See Chapters 10 and 11)

Vague Goals & Objectives
You say your child's IEP goals are vague and subjective. Sadly, this is not unusual. In special education litigation, schools attempt to defend poor IEPs by claiming that the parent "fully participated" in the IEP process and agreed to the vague goals and objectives.Improved OutcomesThe first special education case decided in 1982 by the U.S. Supreme Court was Board of Education of Hendrick Hudson Central School District v. Amy Rowley, 458 U.S. 176. In Rowley, the high court defined a "free appropriate public education" as "access to an education" or a "basic floor of educational opportunity."Although some courts still cite the Rowley decision, the legal landscape is changing. The No Child Left Behind Act of 2001 requires states to adopt high academic standards for all children. The law also requires schools to test all children to determine if they are mastering these standards. When Congress reauthorized the Individuals with Disabilities Education Act in 2004, the focus shifted from access to the schoolhouse and compliance with procedures to improved outcomes for children who receive special education services.

Who is Responsible for Providing Free Appropriate Education (FAPE)?To answer the question you asked at the beginning of this article, the school is responsible for providing your child with a free appropriate education (FAPE). Your child's Individualized Education Program (IEP) is the roadmap that describes how the school will provide your child with a FAPE.

How to Document Your Concerns When You Disagree with the IEP TeamIf the IEP Team develops an IEP that includes vague goals that cannot be measured objectively, or the IEP team tells you to "take it or leave it," you must put your concerns in writing. These strategies will help.

1. Indicate Your Disagreement on the IEP You are a member of your child's IEP team and a participant in the IEP development process. The law requires you to make your wishes, concerns and objections clear. You can use the IEP to make your objections clear.If the IEP team presents you with an IEP that you believe is not appropriate, you should share your concerns. You may say that the IEP does not provide your child with enought help or the right kind of help, or that your child is not making sufficient progress. Be polite but firm.Tip: Think about how Miss Manners would handle a difficult situation and use this to guide you.If the IEP team asks you to sign consent to the IEP, despite your disagreement, pick up your ballpoint pen and write this statement on the IEP: "I consent to this IEP being implemented but I object to it for the reasons I stated during the meeting."Then sign your name.Now the school has a problem. You told them that you do not think the program is appropriate for your child. You advised them of this in writing on the IEP. You consented to the program, but you made it clear that you don't think the IEP is appropriate.Do not be surprised if someone gets angry and says you are not allowed to write on your child's IEP - that it is a legal document. This is not true. IEPs are subject to change. Nothing prohibits any member of the IEP team from writing on the IEP document.If someone does try to stop you, continue to write. If someone tries to pull the IEP out of your hand, continue to write, while pressing down hard with your ballpoint pen. If someone pulls the IEP away, continue to write, pressing firmly, as the IEP tears.

Stay calm. Pick up your copy of the IEP (whatever is left). Stand up and say, "Thank you, I think this meeting is over." Extend your hand to shake theirs. PIck up your recorder and leave. This actually happened in one of my cases. When the parent began to write on the IEP, the special education director yelled "Stop! The IEP is a legal document. You are not allowed to write on it." He yanked the IEP out from under her pen as she was writing. The IEP tore in half.Subsequently, the parent requested a due process hearing. When the school board attorney and superintendent reviewed the file and ripped IEP, the case settled quickly.

2. Tape Record MeetingsIf you anticipate problems with the IEP team, you should tape record the meeting. Make sure your recorder is out in the open.

For specific advice about how to tape record meetings, read Chapter 26 about "Maintaining Control in School Meetings" in Wrightslaw: From Emotions to Advocacy.The school has a problem. You have told them you do not think the program is appropriate for your child. You advised them of this in writing on the IEP. You consented to the program, although you made it clear that it is not appropriate.

3. Write a Letter
When you get home from the IEP meeting, you must write a polite "thank you" letter. Describe what happened during the meeting, document your concerns, what you requested, and how your input and requests were received.

Perhaps you consented to IEP being implemented because "something is better than nothing". Perhaps you decided that the school's inadequate program was better than no program at all. In your letter, you need to clarify that you believe the IEP is not appropriate for your child. Advised the IEP team that you consented to the school implementing the IEP and that you assume the school will implement it. Request another IEP meeting to resolve the outstanding issues. If you take these steps, the school will want to avoid a due process hearing.In Wrightslaw Special Education Law and Advocacy Training programs, participants learn the Rules of Adverse Assumptions: * assume a due process hearing will be necessary to resolve your dispute;
* assume that all school personnel will testify against you;
* assume that the school personnel's recollection of the facts will be opposite of yours; and
* assume you cannot testify.

If you cannot testify on your own behalf, how can you make your case? What evidence do you have? The best evidence is contemporaneous evidence - written evidence created at the time of an event. You evidence is the tape and transcript of the IEP meeting, the IEP, and letters from you that describe your concerns and requests.Learning and using tactics and strategies helps to resolve disputes before they get out of hand.

Four Rules for Parents1. Your child is NOT entitled to the BEST special education. hAs a parent, you must eliminate the word "best" from your vocabulary when you discuss your child's educational needs. Remember: Your child is entitled to an appropriate education. not to the best education, nor to an education that will maximize your child's potential.2. Parent testimony carries little weight in the eyes of hearing officers and judges.Loving parents are biased. Parents want the best education for their children with disabilities. Testimony from parents about what their child needs is not persuasive and rarely carries the day.3. School staff will testify that their program is appropriate about 99% of the time.At least 99% of the time, school staff will testify that their program is appropriate and the best program for the child. (Note: School staff can and do use the word "best," but parents cannot.)4. Parents must have experts who know the child and who are willing to educate the IEP team about the child's unique needs and what an appropriate program must include to meet these needs.If you have a dispute with the school, you need to have experts in the private sector who have evaluated and observed your child. Experts must never use the terms "best" or "maximizing potential" in their reports or testimony. Your experts should be able to describe the child's strengths, weaknesses and needs. They should describe the educational program that will meet the child's needs, why the public school program is not appropriate, if the child will be damaged if he does not receive an appropriate education, and the nature of the damage.

BECOMING

To grow or come to be: became more knowledgeable; will become clearer in the morning.

MISSION STATEMENT

It is my hope that this blog will serve as a help to other parents along side me in this world of "SPED" (Special Eduction). I hope that the stories I share about the insight I have gained and the pitfalls I have encountered will help others on this journey. I don't know it all, hardly, I'm still learning the ropes, but every time I go to another meeting or finish another phone call I hope to have gleaned something that will help me or others in the next step.

There are so many little secrets that if we share them, will no longer be secrets, and will enable us to advocate for our children more effectively. Every child deserves to be educated and this can only happen if we are diligent and do what we can to make that happen. There are some really good districts that do the best they can for the kids, but there are far too many districts out here that believe it is their job to save money --- at the expense of teaching young people what they can and need to learn to lead productive, and meaningful lives.

About Me

I have been married to my husband for 13 years and we have four children, three of whom are adopted, all of whom have special needs. Our oldest has severe emotional issues due to biology and early abuse. Our second child has partialFetal Alcohol Syndrome, Auditory Processing Disorder and ADHD. We were told she had developmental delays but now we are have been told that her pFAS actually makes her function like someone with a lower IQ. Our third child (bio) was born with Down syndrome and also has autism. Our youngest, a boy we got straight out of the hospital after he spent two months in the NICU due to trauma right after birth and not much was expected from him but he is doing great! He continues to have some speech delays but we expect he will be ready for kindergarten and need very little help.
I went to school to be a Marriage and Family therapist, and I loved my work but our biological daughter presented with too many issues for me to be able to work and care for her. Because I care about kids fostering and then adopting and now becoming involved in helping other parents to advocate for their kids has been a natural move for me.